Type 1 Diabetics – Anyone got a FreeStyle Libre ?

Viewing 40 posts - 121 through 160 (of 165 total)
  • Type 1 Diabetics – Anyone got a FreeStyle Libre ?
  • Premier Icon Harry_the_Spider
    Subscriber

    …and you get healthier patients who, if we are talking money, are cheaper to treat in the long term.

    I just don’t get it.

    If they find a cure will it not be offered because it costs too much or you live on the wrong town?

    Premier Icon tomhoward
    Subscriber

    If they find a cure

    Sorry to be blunt, but that’s never going to happen. Too many companies are making too much money from treating it than they’d get for finding a cure, and thus cutting off a massive revenue stream.

    poly
    Member

    …and you get healthier patients who, if we are talking money, are cheaper to treat in the long term.

    Those benefits probably don’t manifest themselves in the current FY, and the really big savings aren’t even in the same parliament.

    Sorry to be blunt, but that’s never going to happen. Too many companies are making too much money from treating it than they’d get for finding a cure, and thus cutting off a massive revenue stream.

    That does make it very unlikely that the existing treatment providers are motivated to do this – but it doesn’t preclude someone else stealing their lunch.

    Premier Icon tomhoward
    Subscriber

    but it doesn’t preclude someone else stealing their lunch.

    True, but who else is as well or better funded than big pharma, and has the will to do it?

    scud
    Member

    Hopefully a cure will be forthcoming with the progression of stem cell research and the like, but it does grate that you can receive the system purely because of where you live.

    It seems it is like our roads, they do not have enough funding to do the job properly with tarmac, instead we get chip and seal, as it is all about the short term.

    DickBarton
    Member

    Hopefully not going to offend anyone but having had this for 42 of my 43.5 years, I’m not sure I want cured. I don’t know how I’d be…I’m used to this and my routines/patterns, I’m not great with it but it doesn’t stop me doing anything.
    Suspect many (all?) won’t think like that particularly newly diagnosed.
    Would be great if it can be cured though.

    Premier Icon Harry_the_Spider
    Subscriber

    I get that.

    poly
    Member

    Tom – government funded research (BBSRC etc), welcome Trust, diabetes charities etc are all possible non pharma source of research. A “cure” isn’t necessarily free either so that opens the field to various biotechs, pharmas who don’t currently service diabetes etc. Of course the question is who has the staying power for the lifecycles and timescales involved.

    Personally I think a “vaccine” is more likely. (ie spot people who are at risk and provide a preventative treatment rather cure after diagnosis).

    Dick – doesn’t seem that odd to me. I think Mrs P would not take a surgical solution if it was offered, and I know my father wouldn’t. If there was a no side effect, low risk, one off treatment it might be different, but that’s almost certainly not going to happen in my wife’s lifetime (or at least not for people of whatever age she is when it comes along). Doesn’t stop her parents keeping every Mail/Express “cure for diabetes soon” type article for her!

    Premier Icon Harry_the_Spider
    Subscriber

    Doesn’t stop her parents keeping every Mail/Express “cure for diabetes soon” type article for her!

    My parents do that but they show them to me, not my daughter.

    aphex_2k
    Member

    Been reading about pancreas transplants, but this seems to also coincide with renal failure and dialysis and they seem to do both kidney and pancreas transplants at the same time. I would certainly consider surgery for a pancreas transplant, but not if it means I must have ruined my kidneys in the first place. A bit sick of it all now after 20+ years. The pump and CGM is fantastic, but I’ve got early signs of retinopathy in my left eye already and I’m only 43. Off to see an eye surgeon when I get back from UK and hopefully it’s been seen early enough that meds, or a couple of lovely eye injections, can fix up. I’m always aware of the risks of this condition but when the optomotrist said he was going to refer me on, just to be on the safe side, panic set in a little.

    New pancreas? Yes please.

    Premier Icon tomhoward
    Subscriber

    On the pancreas transplant, doctors/specialists have all told me that chances are, whatever it was that borked pancreas 1.0, would go after 2.0 too.

    Don’t get me wrong, I’d take a cure in a heartbeat, after 27 years of it, but as there has been a cure ‘5 years away’ for every one of those years, (again, parents and grandparents constantly showing me articles) I’m kind of resigned to it now. Hell, it took a fair effort to get over my cynicism of the libre (tried non invasive testing 15 years ago, was shit).

    aphex_2k
    Member

    Do you pump or inject? Isn’t the freestyle 10-15 mins behind what your actual b/s is? Not sure I could roll with that. Will be going closed loop in about 18 months I’m just waiting for Medtronic to settle a bit as there’s been a few niggles with the 670g and new sensors. Essentially a digital pancreas. All my pump does now is basal/bolus and cuts off when I’m low (gives me plenty of warning, God the thing beeps constantly…..

    I hear ya though…. There’s always the “this is it, 4 years from now” etc…..

    Premier Icon tomhoward
    Subscriber

    It’s 5 mins behind. It’s good enough now that the DVLA have approved its use before driving.

    Premier Icon kelvin
    Subscriber

    cuts off when I’m low

    I’ll be more than a little relieved when kids can get this kind of tech. I’ve not had a full nights sleep since… well, whenever I was last away from the family for a weekend.

    aphex_2k
    Member

    It’s 5 mins behind.

    Great the dvla are happy with it, that’s awesome. is there any info on their site? I always thought interstitial would be 5-10 mins at best compared with BGL.

    I’ll be more than a little relieved when kids can get this kind of tech

    It’s amazing. I had a period of 3 weeks over Christmas when I had to go back to MDI and short / long acting insulin. I hypo’d so many times at night through those three weeks. My pump and cgm tells me “buzz…beep hey…. you’re head towards a hypo” and you can see the graph. Has 1, 2 or 3 arrows depicting how fast my sugars are dropping. When it drops to a pre-determined rate (IE before I’m a sweaty mess) it buzzes and beeps and stops delivery of insulin until my sugars go up out of my hypo range. Have a stack of Jelly Babies and 4mg fast acting glucose tablets next to me bed. V.v.v. handy.

    steamtb
    Member

    I’ve been using CGM for many years, first as part of a medical trial before they were generally available in the UK and pretty much continued using them ever since. Different brands seem to suit different people, personally I’ve always preferred Dexcom over the old or new Medtronic systems; my current G5 is superb and even if my BG is falling quickly its barely behind a finger prick test and is superb for mountain biking. There seem to be lots of kids using the Dexcom systems now, so also worth browsing the various Facebook groups etc.

    I’ve also gone low carb (30-70g per day), which along with the CGM really helps (life could be a bouncy nightmare before that), I’m hoping my HbA1c will be or dip below 5 over the next six months but we will see.

    DickBarton
    Member

    Aphex_2k, what system are you using? I’m on a Medtronic 640G and the Libre. I’d really like a closed loop system as I suspect setting the range to stop or increase dosage if I’m going out of range. Would help (would help everyone not just me).

    Premier Icon Giallograle
    Subscriber

    How do you get them on them on the NHS?

    I should be a dog 🙂

    Good for tracking BG overnight, and for trends, up or down is advance warning

    I suggest the Android application Glimp to calibrate the numbers from the sensor.

    Premier Icon tomhoward
    Subscriber

    I’ve also gone low carb (30-70g per day), which along with the CGM really helps (life could be a bouncy nightmare before that), I’m hoping my HbA1c will be or dip below 5 over the next six months but we will see.

    Below 5%? As in way better than most non diabetic folk? What are you now if you don’t mind me asking? A hba1c of below 6% and a doctor wouldn’t diagnose you as diabetic.

    aphex_2k
    Member

    Mines the 640g with the medtronic cgm so not closed loop, thats the newer 670g. I find it great. Much easier to get a pump over here in Oz as my private health covers it. I couldn’t get one on the NHS probably I’d have to self-fund. But having a pump for 4+ years and now 8 months or so into the new one with CGM I couldn’t go back. Hypos are a rarity and if I do have one it’s because I’ve ignored the warnings from the machine. I still do go hyper when I’ve underestimated bolus amounts and stress sends me high too. I never really realised how much stress affects my levels but when you’ve got a graphical representation on the pump it shows when I’m stressed even when I wouldn’t nevessarily say I felt that way. Work pressure really does affect me, last minute meetings, crisis, short-noticed presentations and case reviews, convincing a psychotic patient they need to be in hospital and if they don’t come now then I’ll section them and take them in by force with the cops….

    Could not go back to MDI and that’s been proven by the three weeks I was forced to do this. (This happened after going for a run, I disconnected my pump and put it on the roof of the car, then forgot and drove home! Lost it)

    stoddys
    Member

    I’m so excited
    Had my 9 month checkup today, and was going to ask again, like last time, if I qualify, and the doctor said have you heard about the new tester are you interested?
    YES
    The result on the 8th of May I have a training appointment, and the are writing to my gp to put them on my prescription on a 6 month trial. Followed by a review.
    My HBA1C generally was mid 7.somthing and is now 8.2. I don’t know if that made a difference.
    I’m 50 and been diabetic since I was 11.
    That’s it.
    Happy chap Stoddy

    robw1
    Member

    just found this thread. Been using libre for about 18 months. Has changed the way I manage my T1….not always successfully, but has been really good.

    just posted in nother thread (about omnipod) saying that I use a miao miao Bluetooth device to link the libre to my phone so I don’t need to scan it. worth looking at for libre users. the apps can create alarms and predict BG.

    will keep an eye on this thread.

    scud
    Member

    Would be interested to know of those that use the Omnipod, have you had any more issues with it since they changed manufacturer? About every 4th one seems to fail with my daughter at the moment, with the catheter leaking or becoming clogged.

    Premier Icon kelvin
    Subscriber
    aphex_2k
    Member

    640g isn’t closed loop – it doesn’t give you more insulin when you’re levels rise. The 670g is closed loop and the new sensors have been approved in Aus since around Feb of this year. I can’t technically upgrade via my health fund until the end of the 4 year warranty period.

    However. Due to a moment of idiocy (went for a run, disconnected my pump when I got back to the car, put it on the roof, then drove off! Lost it!). Medtronic Aus do a pump loan scheme which costs me (plus the cost of the CGM monthly). I’m waiting on their rep to get back to me to see if I can be one of the first to rent a 670g and new sensor tech, which would mean closed loop. I get on really well with the rep (but I find Medtronic customer support to be atrocious) so fingers crossed.

    Just found out I’ve got a bit or retinopathy in my left eye so the 20 something years of MDI and poor self care hasn’t done me any favours. Have an appt with the eye surgeon early May.

    Will keep you all posted on the progress of the 670g if I manage to get one.

    chipster
    Member

    This afternoon, I’ve become the proud owner of a Libre.
    I’m 59 years old, diagnosed at 30 years.
    I’ve been losing awareness recently, been to see the DSN, who seemed to be more than happy to let me try the Libre out.
    He said that they (Mid Yorks NHS) will fund, if I can tick the correct boxes.
    Losing hypo awareness is one of them, another is having a job where my hands are usually dirty.
    I have to start with the one sensor (that came with the kit), call him next week and he’ll prescribe a month’s supply, then 2 month’s, and so on.
    I’ve downloaded the app (android) and I’ll probably get the MiaowMiaow if/when I get permanent funding.
    Any tips for a new user?
    What’s the score with the Kinesio tape?

    Premier Icon Harry_the_Spider
    Subscriber

    Good stuff.

    Tips from us are that you will spike after breakfast if you eat cereal and that if you apply the sensor before the arm isn’t 100% dry after the alcohol wipe it won’t stick and will be wasted.

    chipster
    Member

    I’m expecting loadsa spikes, which will hopefully mean I’ll be trying to cut out the sugary stuff (cereal biscuits).
    I noticed the DSN wasn’t in a rush, after cleaning my arm with the wipe, to stick me with the sensor. I’m wise to that trick, though, I’ve had a pump for quite a few years.

    chipster
    Member

    Well, the Libre has been fine all weekend, but I have managed to rip the sensor off my arm when I caught it, through a polo shirt sleeve, on a mesh guard, after 4 hours at work. 😕
    The good news is that Abbott are sending another FOC.
    I was advised by the Abbott customer care lady not to cover the sensor with anything, but I imagine they won’t be fond of replacing many more, FOC.
    What do others use? Lycra band or Kinesio tape?

    Premier Icon tomhoward
    Subscriber

    In 4 years I’ve never ripped one off accidentally, but if I was worried about it, I’d use a 10×10 mepore dressing.

    fossy
    Member

    We’ve used kinesio tape – use a £2 coin to cut out a circle for the libre.

    We’ve been self funding and our Trust won’t give my son one at present. He’s just landed himself in hospital for 4 days (18 year old) – bloods in 20’s and Keytone’s of 0.9. Just not been testing or managing his pump – going days without a finger prick.

    His pump is out of warranty and they are delaying issuing a new pump because of his poor control – he’s actually got burnout and is sick of his T1 – it’s something most T1’s go through at some stage. Just so happens to be the wrong time for him.

    latham2104
    Member

    @ chipster

    9 year old son is T1, wearing a libre for 3 years. Use this tape…

    https://www.wilko.com/en-uk/wilko-blue-cohesive-bandage/p/0348502

    Not had one come off yet and considering he does what 9 year old boys do (rugby, football, swimming, karate, fighting etc etc), its great.

    We don’t bother cutting out the tiny hole in the middle like the rep advised us, and we’ve not had one fail.

    scud
    Member

    Sounds tought Fossy, my daughter is 9 and is fine 95% of the time and deals with it well, but occasionally she asks why it has to be her and why she has to be T1, breaks my heart sometimes.

    She is very strong willed, so not looking forward to her being a teenager!

    We have used kinesio tape and for sport she just has a tubular bandage over her sensor just to help stop her knocking it which she has done a few times.

    Premier Icon Harry_the_Spider
    Subscriber

    We use the Wilko stuff too. My daughter does karate and hasn’t had one detach. Our only failure was down to me not letting the skin dry before application.

    chipster
    Member

    Fossy, must be a bad time, being a teenager with all the teenage stuff AND the diabetes hoops to jump through. Not great for you either, I imagine.
    So, with the Kinesio tape, it goes around the outside of the sensor, not over it completely?

    Tom, I suppose it doesn’t help that my job involves walking by the side of 45mm square mesh guarding, but the nurse put the sensor on the back/side of my arm, kind of in the way. I’ll be sure to put the new one further round the back.

    Premier Icon Harry_the_Spider
    Subscriber

    Yep, stick it on the back.

    Sorry to hear about your lad Fossy. We’ve got all of this to come :-/

    chipster
    Member

    Crossed posts.
    Thanks for the replies, folks. I’ve already got some kinesio, but I’ll pop into Wilko’s when I get chance (Saturday).

    DickBarton
    Member

    Do you wrap the arm with the tape or how much more coverage over the sensor? I’ve knocked a fair few out and reckon having another cover would help…that tape might work as micropore doesn’t!

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